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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

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or contact
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BO Sufferers Podcasts

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Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
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RESEARCH DETAILS

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£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

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Tuesday, May 7, 2019

UK : New MP Email Campaign

To get POLITICIANS aware of METABOLIC BREATH/BODY MALODOUR and to get them to influence the HEALTH SYSTEM in our favor, seems like a very good lead.

A recent email campaign to MPs resulted in 2 UK MPs asking the UK Health Minister what is done for TMAU
Emma Hardy MP reply
Christopher Chope MP reply

One person was to meet their MP about TMAU, but due to the Brexit debacle (MPs needed to vote on Brexit at short notice) it was cancelled for now. Hopefully it can go ahead in the future.

Recent UK TMAU petition to parliament (closes 12 May) 

Simple things can be achieved such as :
1. Getting them to ask a question on TMAU in Parliament.
2. They ask the Health Minister a question on TMAU (e.g. research).
3. Ask for easier access to the TMAU test.
4. Ask them to ask the London Metabolic Clinic (Charles Dent) to host TMAU support meeting like Ireland has started, and to attend.

MEBO's KAREN is at the forefront of this new email campaign.
Karen has this message for the UK Malodor Community.

UK MPs need to hear us

UK ACTIVISTS ARE SENDING EMAILS TO MPS THIS WEEK. PLEASE WRITE TO YOUR LOCAL MP TO SUPPORT THE EFFORT. IT DOESN'T MATTER IF YOU'VE ALREADY SENT THE MP A MESSAGE BEFORE. THE INTENTION IS THAT MANY DIFFERENT MPs WILL RECEIVE AN EMAIL AT THE SAME TIME.
Find your MP : https://www.parliament.uk/mps-lords-and-offices/mps/

I will send the message below:

Many thanks in advance for taking the time to read my email about metabolic body and breath odours such as Trimethylaminuria. Our community are having difficulty conveying the importance of these disorders to medical institutions.

Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people.

The (TMAU) treatment protocol (dietary choline restriction, rotations of antibiotics, B2 supplementation, chlorophyll, activated charcoal) is ineffective for many people and, even in the cases where choline restriction has successful results, the repercussions are dangerous; choline is a vital nutrient and deficiency leads to health implications.

Malodour disorder impacts negatively on every aspect of the sufferer’s life, and this impact is much more severe in children and teenagers. It impedes normal social interactions, work and school relationships, intimate relationships (devastating for teenagers!) and generally taints the sufferer’s personality development, causing anger, frustration and despair.

As people’s educational achievements and career paths are negatively affected by this disorder, the economic implications are obvious. Many of us are unemployed or under-employed as a result of it. Students struggle to finish education and are discriminated against in the workplace even when they do finish their studies.

Inappropriate treatments and misplaced diagnostic investigations for patients complaining of bad odour are costly to the NHS. Counselling of malodour patients is also costly. A proper cure would be more cost effective.

How you can help us:

Please pose a question in parliament: ask the health secretary to enable a conference in conjunction with UCLH medical professionals and TMAU community members to discuss improving diagnostic testing for these conditions and research into finding solutions.

Please tweet to raise awareness of metabolic body and breath odour conditions among medical practitioners and the general public.
 
Example of what can be achieved : 
Chronic Fatigue Syndrome Debate in Parliament

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A EURORDIS and NORD Member Organization

1 comments:

Unknown said...

Hello,I'm living in the US and for some reason, doctors tell me it's in my head. Every doctor I ask about this disease they say they never heard of what I'm talking about? Is there any way that the research can span outside of the UK? Just asking because we need help too!!!!!!

May 9, 2019, 7:00:00 PM
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